ASPERGER'S & GRANDPARENTS' REACTIONS

Sasha is our beautiful six-year-old daughter.
She has Asperger's
syndrome, which thankfully was diagnosed early and we have been
lucky enough to afford intensive therapies for early
intervention. She also got a spot in the local center for Autism
Spectrum Disorders where she has done so well they think she may
be able to merge into the normal school system eventually, although
with support.

A huge problem is that my parents don't think
she is doing that well. In fact, my father thinks she is spoilt,
lacks discipline and thinks my parenting, or lack thereof, is simply
making her worse each year. My mother doesn't quite see it this
way, but she has never been able to bond with Sasha and does very
little to communicate with her.

It is hard to describe the pain this causes for
my wife and me. Sasha is part of who we are, so a rejection or criticism
of her is a rejection and criticism of a large part of us. This
could easily devastate our relationship with them, and the past
few years have seen our fair share of lip biting, arguments and
stony silences. This is in comparison with my husband's Greek parents
who lavish Sasha with attention and food. They still don't understand
Asperger's that well, but just figure 'what kid doesn't have a problem?'

Why can't my parents show the same unconditional
love? If Sasha was a paraplegic in a wheelchair, they would be oozing
compassion and sympathy for such a brave courageous girl. But because
the disability is not visible, they just block her out as though
she was simply a mistake of nature!

Asperger's from a grandparent's perspective

Sasha hates gentle cuddles or sitting quietly
on mum or dad's lap. She still has trouble with eye contact, and
like so many kid's with Asperger's, appears often to be off in her
own world. She rarely show interest in what grandma and grandpa
might have to say, or in the presents they bring her. What's more,
they see a lot of her emotional outbursts when Sasha is overcome
by too much noise and motion caused by their visiting.

I can see how this looks from my mom and dad's
angle. To them, Sasha is wilfully disobedient, aloof, self-centered
and is not being 'smacked into line' by us. A few times we have
been out in public and my father has actually gone to hit Sasha
when she has started screaming uncontrollably. Thankfully we were
able to stop him. Nowadays he will say 'hello Sasha' in a disgusted
kind of voice and that's the end of the communication.

My mother tried so hard with Sasha but has given
up too. All she will say is things like 'what a shame' and 'at least
her brother is normal'. Sasha is extremely sensitive to touch and
hates normal hugs and affection. However, she loves rough and tumble
play, and with enough of this she will accept firm bear hugs at
the end of it. Unfortunately my mum just can't do this - it isn't
in her nature. This inability to give Sash affection normally has
driven a wedge between them.

Why they don't accept Asperger's in Sasha

Why do they think like this? I think part of it
is their generation has a scepticism for the medical establishment
and new diagnoses. My father simply refuses to believe in autism
or Asperger's. I can show him countless papers, statistics and articles,
but no, these kids simply need more punishment. Their generation
did rely much more on discipline, punishment and wonderful adages
like kids should 'be seen and not heard'.

I think too that they are grieving for Sasha in
their own way. Like all of us, they had their expectations of what
she would be like, and grow up to be. My father is quite self-centered
and loves the awe and admiration he can evoke in the eyes of his
other nieces and nephews. My mother simply loves to lavish them
with hugs, cuddles and presents - all the things that just don't
work with Sasha. I think their rejection of Sasha is tied up with
this grief, and complicates the process of adapting to her. I think
they do love her in their own way, but their generation often had
trouble with deep emotions, talking about them and working through
the issues.

How to cope as parents of a daughter with asperger's

My advice to other parents in our situation would
be to prepare grandparents early. We were so caught up in the initial
Asperger diagnosis
and early
intervention process that we left mom and dad out of the loop.
Ideally we should have been explaining Asperger's to them right
from the start, explaining how it affected Sasha, and the sort of
responses we would all need to make. We tried this much later and
it didn't seem to sink in by then. Maybe early intervention is needed
for grandparents as well!

There comes a point where arguing is just destructive.
My father is opinionated, self-focused and inflexible, and we've
had to accept that and let it go. The hard part is not to resent
him or his rejection of Sasha. It is a bit similar to Sasha's screaming
in public. We can resent the filthy looks we get from other people
and get angry, or simply block it out. Even better, we can respond
with understanding and compassion for their lack of insight and
understanding. Our faith has helped here. In a way, Sasha has deepened
our faith as Catholics as we try to meet ignorance and criticism
with love, or at least without a negative reaction. As with Sasha's
life, all of this is simply a work in progress!

Click here
to read a fact sheet on how extended family can play a key support
role.

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at www.autism-help.org
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